Fall 2007 - International Waldenstrom's Macroglobulinemia ...

PAGE 14
From IWMF-Talk, cont from page 11
Betty McPhee writes regarding the phenomenon of
Rituxan flare to remind us that not everyone experiences
it. Guy Sherwood says that many oncologists recommend
plasmapheresis before Rituxan therapy when IgM reaches a
certain level, though this level varies by doctor. Matt raised
the issue of one downside to a great treatment result: after a
course of fludarabine and Rituxan no less than eight years
ago that brought his hemoglobin and IgM all the way back
to normal levels, Matt’s IgG worsened with every blood
work report. Could the combo treatment have caused that
negative despite the positive results with other important
blood readings? Should Matt seek the fludarabine/Rituxan
combo treatment again if it becomes time to treat?
Jeff Atlin writes about Velcade and Rituxan in combo,
referencing a Phase-II trial in which the amount of Velcade was
halved. The result: excellent response—and fortunately without
the PN previously associated with higher dose Velcade.
Another thread of Talk that sparked interest concerned a
rapid-infusion test of Rituxan. The standard infusion rate
for Rituxan, established empirically taking potential adverse
reactions into account, is slow, ranging between 4-7 hours.
But, as recently reported, 1200 patients in British Columbia
tolerated Rituxan delivered by a severely compressed
infusion schedule in which 20% of the total drug was infused
in the first 30 minutes and the remaining 80% in the next
60 minutes. What a potential improvement in resource
utilization! Betty McPhee said that she had recently had a
rapid infusion of Rituxan without problem.
Finally, there continues to be considerable passionate
discussion on IWMF Talk about the many unknowns
concerning maintenance Rituxan. Bob Bent, Ron Draftz,
Dave Johnston, Dr. Tom Hoffmann, and this writer, among
many others, weighed in with a wide array of thoughts and
speculations. Though the evidence does not now exist to
show that maintenance-R is or is not a treatment approach
superior to Rituxan-As-Needed, this topic continues to
excite the imaginations of the readers of Talk as much as,
if not more than, any other topic that pops up. There have
been many reports from patients who say they were, or are,
on maintenance-R schedules, with spirited responses from
others. Perhaps Guy Sherwood has the last word-–for now,
anyway!–with a reminder from the scientists working so
hard for us. A panel of experts at the recent 4th International
Workshop on WM on Kos Island, Greece, addressed the issue
of maintenance Rituxan, and there was a virtually unanimous
decision that the recommendation in favor of maintenance
(every 3 months for 2 years or similar protocol) could not
be made at this time because of lack of data. By the time
the next International Workshop on WM is held in two years,
Guy expects that sufficient data will be available to make a
confident, fact-based recommendation, be it for or against
maintenance Rituxan. In the meantime, we can expect this
topic to continue to surface again and again.
SUPPORT GROUP NEWS
edited by Penni Wisner
New support groups continue to blossom and expand.
Here in California, in the south, a new group formed, and
the Orange County group is very active. One of the most
exciting developments for groups has been the visits of
Drs. Irene Ghobrial and Steven Treon, both of Dana-Farber
Cancer Institute. Their cutting edge research and clinical
expertise is very much on display in their presentations at
these small (compared to the annual IWMF Educational
Forum), meetings. And summer appears to be a social
season for support groups as many host annual barbecues
and picnics. A recent post to IWMF-Talk concerned research
into what patients wanted from support groups. Run by and
for WM patients and their families and friends, they reflect
our unique concerns. Read on to discover what the groups
in your area are discussing.
CALIFORNIA
Los Angeles
Katie Coen organized the Los Angeles support group which
met for the first time in July. They had a good turnout and
plan to continue to meet regularly. Occasionally, the group
will join with its neighbor in Orange County for programs
such as the October 6 presentation of Dr. Irene Ghobrial.
Orange County
Marty Glassman, co-leader of the Southern CA support
group, organized the October 6 meeting featuring Dr. Irene
Ghobrial at the Hoag Cancer Center in Newport Beach.
Sacramento and Bay Area
Does it count as a meeting when two members meet? Talk
on the telephone? Perhaps the most important—and most
enjoyable—role of support group facilitators is that of “first
responder.” Newly diagnosed patients find the name of the
local group leader on the web and call or email. Hopefully,
after that initial call, patients can more easily navigate the
often confusing path before them. At first some patients are
reluctant to attend a meeting: they are afraid a room full of
WMers will be a room full of sick people. Or they just do not
want to think about their disease. But then, gathering their
courage, they show up. And discover homemade cookies and
a caring group of active, intelligent, curious, dedicated peers.
And from these, they can learn what lies ahead after diagnosis,
the subject of the group’s fall meeting October 14.
COLORADO & WYOMING
The Colorado-Wyoming support group (also known as
the Rocky Mountain support group) enjoyed a wonderful
presentation in September by Dr. Irene Ghobrial. She spoke
to a joint meeting of the IWMF group and the local chapter
of the Leukemia & Lymphoma Society. The winter meeting
will feature Dr. Steven Treon on February 9.
Support Group News, cont on page 15